The meeting where your team will plan you or your child’s care
This may be referred to as the ‘Multidisciplinary Meeting (MDT)’ or ‘the Joint Congenital Cardiac Meeting (JCC). For the purposes of this information this will be referred to as the MDT. Your Cardiologist (Heart Doctor) has mentioned to you in clinic that they would like to discuss your case at this meeting. The information below explains what is involved. We will refer to ‘you’ or ‘your’ throughout this information but this includes ‘your child’s’ care as well.
What is the MDT?
The MDT is a meeting that happens once a week to discuss patients of all ages. There are many specialists who attend this meeting all of whom are trained or have a special interest in Congenital Heart Disease. This includes Congenital Heart Surgeons, Congenital Cardiologists (including your Heart Doctor), Cardiac Anaesthetists, Congenital Heart Nurse Specialists (Cardiac Nurse Specialist) and a Cardiovascular Radiologist (a doctor who specialises in looking at images of the heart). There are often other doctors from different specialties present at the meeting who are also involved in your care. These may be doctors from other hospitals who join the meeting via video-conferencing facilities.
Why is my case being discussed at the MDT?
When you have been born with a heart problem it is very important that you remain under the care of a specialised Congenital Heart Team. This team will be involved at every stage of your journey. Making important decisions about treatment in childhood and deciding if surgery or further treatment is required. Most adults will require life long follow up. This means that you may require
further treatment as an adult. Deciding when is the best time to offer a patient further surgery or treatment requires the expertise of the whole team. You will normally need some up to date tests prior to being discussed. You may have some of these tests done at your local hospital and we will make sure that the images and results are available for the meeting. Your Heart Doctor will decide which tests you require but this may include one or more of the following:
- Echocardiogram
- Heart catheter test
- Exercise test
- Heart monitor to look at your rhythm
- Blood pressure monitor
- MRI scan of your heart
- CT scan of your heart and chest
How long will I have to wait to hear the result?
This depends on how quickly your Heart Doctor wishes to discuss your case with the team. The meetings are held weekly. If you are unwell or you are in hospital you will be discussed at the next available meeting. Most people however are discussed on a routine basis. This may mean that you will wait your turn to be discussed. During this time, you can contact the Congenital Heart Nurse Specialists if you wish to know where you are on the list and would like some support with this process. It is also important to contact the Congenital Heart Nurse Specialists if you are concerned that you have developed new symptoms that you think are important.
Can I attend the meeting?
No, patients and families do not attend this meeting. Your Heart Doctor will present your case as they know you and your heart very well. They will have spent time in clinic asking you lots of questions about how you are feeling, how you are managing with day-to-day life, and how much exercise you can do. As well as presenting the results of all your tests they will also discuss any other factors that are important to help them make a decision. If you are concerned and want important information to be shared at this meeting then you can contact the Congenital Heart Nurse Specialists to ensure that this happens.
What are the possible decisions that may be made about my care?
There are four possible outcomes following discussion of your case. These are;
Medical Management
This means that the doctors do not think an operation or a catheter procedure is needed at this time. They will continue to monitor you in clinic and they may recommend adding or changing your medication.
Further Investigations
This means that you need to have further tests before the doctors can make a decision about your care. You will be informed what further tests are required. Your case will need to be re-discussed at the MDT once you have completed these.
Catheter Intervention
This means that you need a catheter intervention (a keyhole procedure performed through the blood vessels in your groin or sometimes in the wrist for adults). You will normally receive a letter informing you of what procedure is required. You will be listed for this procedure and will be seen in a pre-admission clinic by Congenital Heart Nurse Specialist who will explain all about the procedure and what to expect. You will also see one of the Doctors who specialises in performing these procedures who will explain in detail what is involved and will be able to answer your questions.
Surgical Procedure
This means that you are being considered for an operation. You will receive an appointment where you will have the opportunity to meet one of the Congenital Heart Nurse Specialists. They will give you lots of practical information about having a heart operation and what to expect. They will discuss with you the operation that is being planned. You will be invited to a pre-admission clinic as part of this process. During this time, you will be asked to sign a consent form. You will also meet the surgeon prior to your operation.
In rare complex cases the decision regarding the need for surgery is not clear cut. You will be offered an appointment to come and discuss the risks and benefits of any surgery for you as an individual. In such cases the decision to proceed is made individually between yourself and the Congenital Heart Surgeon. Sometimes it may be appropriate to seek a second opinion.
Dental care
If it has been decided that you need a procedure or an operation on your heart it is important that you make an appointment to see your dentist as soon as possible. You will need all dental work to be completed before you can have a heart operation or procedure. We would recommend that you organise this before you are seen in clinic, so it does not delay your treatment. If you do not have a dentist and need advice around this please contact the Congenital Heart Nurse Specialists.
How will I find out what has been decided?
Your Heart Doctor will send you a letter explaining the outcome of the meeting. You may also be contacted by the Congenital Heart Nurse Specialists. You may be invited to back to see your Heart Doctor in clinic to discuss the outcome.
Congenital Heart Nurse Advice Lines